Abstract
This visual essay presents a series of photos which were the result of a more wide-ranging project conducted by the Romanian Hospice Casa Speranței in Brasov. The photos were taken by adult cancer patients of the Hospice as a way for them to illustrate their own visualisation of their experience of this disease. The patients were asked to add a descriptive text to the images; the photos were then grouped into categories and brought together to form a narrative. Photovoice was used to elicit a personal perspective on the patient’s experience of what it means to live with an incurable disease such as cancer.
Hospice Casa Speranței was the first registered charity organisation established in Romania to introduce and develop palliative care services, which are a specialized service for patients affected by progressive chronic or life-limiting diseases. Since 2002, Hospice Casa Speranței has been acknowledged as a centre of medical excellence in the field of palliative care throughout Eastern Europe.
The project that supplied the visual materials presented in this essay was conducted during the period 2013–2014 and aimed to evaluate the socio-medical needs of the Hospice patients. Interviews with 40 patients (adults and children), as well as 40 other participants (relatives of the patients) were carried out as the main data-collection method in order to grasp an accurate image of the needs of families with a member who is ill with cancer. Before being interviewed, the participants were asked to take a few photos. I wanted to have an insight into ‘what it means to live with an incurable disease’ and photovoice came to mind.
Photovoice is frequently used in qualitative social research as a communication method (people communicate different things to different audiences through images) and as a data-collection technique. The participants were asked to take photos on various themes and to add a descriptive text intended to facilitate their understanding. The photos are analysed or used to elicit data in interviews (see photo elicitation).
Many foundations and non-governmental organisations use photovoice because it is an efficient method for making a strong impression on the audience (either the decision-makers or the public). Usually it is applied in attempts to raise awareness of various social work themes such as poverty, child labour exploitation, discrimination against disabled persons or women, and so on.
Basically, by using photovoice, people whose voice is never heard have the opportunity to express themselves. The participants are invited to produce visual materials in action or participatory research. For instance, people record and reflect their community strengths and concerns (see Holm, 2008) or are invited to be advocates for their community’s well-being (see Kolb, 2008).
Most outcomes of such projects are exhibitions or media events which display the photos and their significance. For instance, Pink (2008) describes a photographic exhibition depicting disabled people confronted by situations where the physical arrangement of the city restricts their mobility. The photos invited viewers to imagine themselves being the photographed people (for example, if they go to the bank in a wheelchair, they must call ahead of time so that a bank employee can meet them outside for discussions in the street). By getting viewers empathically involved, this was a convincing visual story. In another project, an album was compiled with images depicting the city of Dresden, before and after the destruction caused by the Second World War; the album aroused strong emotional feelings and helped raise the necessary money for restoring the destroyed monuments (see Christmann, 2008).
Returning to our project, I asked the participants to take photos that would depict what they go through in their daily life, living with an incurable disease. Both the patients (adults and children from the urban and rural environment in the county of Braşov) and their relatives were asked to take photographs. This was the task they received: We would like to show, both to ordinary people and the authorities, what sick people go through. We would like them to understand this experience, and we think you are the best people to convey it. We ask you to take at least five photos illustrating your life in order to show others what it means to be sick. Photograph whatever you want, wherever you want and give a title to each photo or write a brief text for each of them, helping viewers to understand them.
I tried not to provide further instructions related to taking photographs as I wanted them to decide what to photograph.
I thought that, through photos, the ‘voice’ of the patients would be better heard and the community and authorities would be better informed about their needs. I gave the patients the opportunity to ‘speak’ through photography and to decide what they wanted to communicate about their lives. I wanted to reveal what kind of people they are, what kind of lives they live and what are their needs and feelings. Images capture the ineffable and enhance empathic understanding (see Weber, 2008). This is why I thought that photovoice would be the best way for sick people to transmit their messages.
I think that the photos made the interviewing process more comfortable (lessening the distance and power relation between the researcher and the participants). It also seems that the pictures were not illustrations of the interviews but something that completed the data obtained through interviews. For example, the participants (especially those with ill children) found it easier to express their emotions through pictures than through words or the impact that cancer had on them was best illustrated in images, before and after rather than in discussions. Also, some of the participants’ needs were expressed only in photographs, not in interviews. Thus photovoice was an instrument that helped both the participants and the researchers to acknowledge the patients’ lives and needs, and to better communicate these to the public as well as the policy makers and providers.
The pictures were exhibited in public places as well as in hospices. Seeing the exhibitions provided some kind of relief for the participants; it brought a feeling of not being alone in suffering to some ill people and families. It also reminded the authorities of their responsibilities and suggested to viewers that they should have a deeper appreciation of life without illness.
We gathered over 200 photographs and I classified them into groups. First, depending on the patient’s age, I split the photos into three groups: photovoices of the adults, the children who could express themselves by taking photographs, and the relatives of the children who were either too sick or too young to express themselves in photographs. Then, due to the special message of some photographs, I created a distinct group: photovoices destined for the authorities. For this visual essay, I decided to present only the experience of adults affected by a life-threatening disease.
The photographs were analysed using coding techniques. Some examples of categories I developed are the ‘support’ category (with its components of family members, friends, institutions, pets) or the ‘activities’ category (with its components of recovery activities and relaxing activities). Then I arranged the categories in a sequence according to the frequency with which they occurred in photographs. The most important category was the ‘support’ category, which appeared more frequently in the images and was present in the pictures taken by most of the participants. Thus, in the narrative I formed, the photos from this category were placed at the beginning and were the most numerous ones.
The categories included in this visual essay were those containing photos taken by all or most of the participants (the majority of the participants took photos representing support, activities, important things in their lives, the impact of the illness, the wish to be ‘normal’ again and the return to the past). Within these categories, I selected some pictures with more impact on the viewer, to be included in the final narrative. For example, from the multitude of photographs with pets I selected one that represented a cat and had the most suggestive text.
For the narrative to be complete, I added some sentences to connect the photos and to form a story from their succession. I used words and expressions frequently used by participants in interviews. Here is the resulting story of the Hospice adult patients:
1. My mother, poor mom, she is also very sick; I don’t know where she finds the strength to look after me; I am so ashamed … She suffers for me, you know; I am her only son.
2. The numbness in my hands makes me dependent on my husband. I cannot get dressed, prepare my food or wash myself because I do not feel things and I drop them. I always turn to my husband and it hurts, because I know it is overwhelming for him.
3. She is the one who stayed, from hundreds of friends …
4. Hopes began to emerge, with the opening of the Hospice doors.
5. She brought so much comfort in this suffering of mine; I have no words to tell you how precious she is to me, and how smart she is. She knows when I am sick, comes by my side and purrs … I’m very fond of her!
6. Motion.
7. It’s a pleasure, a hobby.
8. I watch TV daily, as much as I can and as long as I am not in pain, otherwise I would think all the time about my suffering as I am in great pain … I get informed about what is happening, I listen to someone talking …
9. Books, my dear friends …
10. Forest and rain … longing for everything!
11. Daily prayers … in front of the icon.
12. At a wedding, before I found out about my tumour / In the hallway, at the hospital. I know about the tumour!
13. When you are on the stretcher!
14. I have an entire collection of clocks; yet, now … they only count my hours …
15. An almost normal person.
16. I celebrate my 50 years; even if I suffer from the second relapse.
17. A dream come true … to WALK to this place … Piața Sfatului (Council Square)!
18. School … a dream on hold.
19. I (still) was a healthy person.
20. I see this globe every morning; it makes me think how big this Earth is and how little I could see of it … it reminds me of school, as well as of the joys experienced while I was a child.
Footnotes
Acknowledgements
This visual essay is part of a larger project titled ‘A quality life for people with incurable diseases: Information, training, consultancy’ (CSS09), conducted by the Hospice Casa Speranței in Braşov and co-financed by a grant from Switzerland through the Swiss Contribution to the enlarged European Union.
Biographical Note
FLORENTINA SCÂRNECI-DOMNIşORU is an Associate Professor at Transylvania University of Brasov, Romania, in the Social Sciences and Communication Department and has a PhD in sociology. Her research and teaching focus on qualitative methods, identity and visual sociology. Her most recent article is ‘Acceptable and unacceptable sources of inequality in Romania: A visual study, published in TRAMES: A Journal of the Humanities and Social Sciences (2015) and forthcoming publications include the first book about visual research published in Romania: Visual Data in Social Research.
Address: Transylvania University of Brasov, Faculty of Sociology and Communication, Bulevardul Eroilor 25, et. II, sala TII9. Braşov, Romania. email: